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肿瘤患者使用新型电子患者门户网站支持护理和治疗的体验:对加拿大艾伯塔省门户网站早期使用者和非使用者的定性研究。

Oncology Patients' Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada.

作者信息

Santos Amanda D, Caine Vera, Robson Paula J, Watson Linda, Easaw Jacob C, Petrovskaya Olga

机构信息

Faculty of Nursing, University of Alberta, Edmonton, AB, Canada.

Cancer Care Alberta, Alberta Health Services, Edmonton, AB, Canada.

出版信息

JMIR Cancer. 2021 Nov 24;7(4):e32609. doi: 10.2196/32609.


DOI:10.2196/32609
PMID:34822338
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8663539/
Abstract

BACKGROUND: With the current proliferation of clinical information technologies internationally, patient portals are increasingly being adopted in health care. Research, conducted mostly in the United States, shows that oncology patients have a keen interest in portals to gain access to and track comprehensive personal health information. In Canada, patient portals are relatively new and research into their use and effects is currently emerging. There is a need to understand oncology patients' experiences of using eHealth tools and to ground these experiences in local sociopolitical contexts of technology implementation, while seeking to devise strategies to enhance portal benefits. OBJECTIVE: The purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta's unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities. METHODS: This qualitative descriptive study employed individual semistructured interviews and demographic surveys with 11 participants. Interviews were audio-recorded and transcribed verbatim. Data were analyzed thematically. The study was approved by the University of Alberta Human Research Ethics Board. RESULTS: Participants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta's patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants' broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient-provider relationship. CONCLUSIONS: Although people diagnosed with cancer and their family caregivers considered an online patient portal as beneficial, they identified several areas that limit how portals support their oncology care. Providers of health care portals are invited to recognize these limitations and work toward addressing them.

摘要

背景:随着当前临床信息技术在国际上的广泛应用,患者门户网站在医疗保健领域越来越多地被采用。主要在美国进行的研究表明,肿瘤患者对门户网站有着浓厚的兴趣,希望通过它获取并跟踪全面的个人健康信息。在加拿大,患者门户网站相对较新,目前关于其使用和效果的研究正在兴起。有必要了解肿瘤患者使用电子健康工具的体验,并将这些体验置于技术实施的当地社会政治背景中,同时寻求制定策略以增强门户网站的益处。 目的:本研究的目的是探讨肿瘤患者及其家庭护理人员在使用电子患者门户网站以满足其医疗保健需求时的体验。我们关注艾伯塔省独特的双门户网站环境如何塑造早期采用者和未采用者的体验,因为该省正计划在肿瘤设施中全面推广临床信息系统。 方法:这项定性描述性研究采用了对11名参与者进行的个人半结构化访谈和人口统计学调查。访谈进行了录音并逐字转录。数据进行了主题分析。该研究获得了阿尔伯塔大学人类研究伦理委员会的批准。 结果:目前患有非活动性癌症的参与者将在线患者门户网站视为众多工具(包括互联网、电话、视频会议、打印报告)之一,这些工具可帮助他们理解自己的诊断和治疗、与医疗保健提供者保持联系并获取信息。在2020年秋季,大多数参与者可以访问艾伯塔省的两个患者门户网站之一,并指出了该门户网站在哪些方面支持(或不支持)他们持续的医疗保健需求。从数据中得出了四个主要主题,反映了参与者在使用门户网站时更广泛的关注点:(1)经历怀疑并渴望透明度;(2)寻求成为医疗团队中明智且积极的成员;(3)遇到复杂性;(4)强调患者与提供者关系的重要性。 结论:尽管被诊断患有癌症的患者及其家庭护理人员认为在线患者门户网站有益,但他们指出了几个限制门户网站支持其肿瘤护理的领域。邀请医疗保健门户网站的提供者认识到这些限制并努力加以解决。

相似文献

[1]
Oncology Patients' Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada.

JMIR Cancer. 2021-11-24

[2]
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[3]
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[4]
Implications of Patient Portal Transparency in Oncology: Qualitative Interview Study on the Experiences of Patients, Oncologists, and Medical Informaticists.

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[5]
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[6]
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[7]
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[8]
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[9]
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[10]
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Transl Behav Med. 2023-7-1

引用本文的文献

[1]
Digital Health Portals for Individuals Living With or Beyond Cancer: Patient-Driven Scoping Review.

JMIR Cancer. 2025-7-18

[2]
A targeted literature review on the impact of tailored interventions on patient outcomes in oncology.

Oncogene. 2025-6

[3]
Perspectives on access to imaging digital health records in oncology: A mixed methods systematic review.

Health Policy Technol. 2024-11

[4]
Who is your ideal peer mentor? A qualitative study to identify cancer patient preferences for a digital peer support app.

Support Care Cancer. 2025-3-6

[5]
Designing an interoperable patient portal to augment an Advanced Nurse Practitioner service for Children with hydrocephalus.

Int J Nurs Stud Adv. 2024-7-8

[6]
Women's experiences of using patient portals in healthcare settings: a rapid review.

BMC Womens Health. 2024-8-8

[7]
Patient and Health Care Provider Perspectives on Patient Access to Test Results via Web Portals: Scoping Review.

J Med Internet Res. 2023-10-19

[8]
Identifying contributors to disparities in patient access of online medical records: examining the role of clinician encouragement.

JAMIA Open. 2023-7-7

[9]
Impact of the Immediate Release of Clinical Information Rules on Health Care Delivery to Patients With Cancer.

JCO Oncol Pract. 2023-5

[10]
Association Between Patient Portal Use and Perceived Patient-Centered Communication Among Adults With Cancer: Cross-sectional Survey Study.

JMIR Cancer. 2022-8-9

本文引用的文献

[1]
Adult patient access to electronic health records.

Cochrane Database Syst Rev. 2021-2-26

[2]
The State of Evidence in Patient Portals: Umbrella Review.

J Med Internet Res. 2020-11-11

[3]
Patient Portal Implementation and Uptake: Qualitative Comparative Case Study.

J Med Internet Res. 2020-7-27

[4]
Tracing the Decisions That Shaped the Development of MyChart, an Electronic Patient Portal in Alberta, Canada: Historical Research Study.

J Med Internet Res. 2020-5-26

[5]
Effects of a Web-Based Patient Portal on Patient Satisfaction and Missed Appointment Rates: Survey Study.

J Med Internet Res. 2020-5-19

[6]
Portal Use Among Patients With Chronic Conditions: Patient-reported Care Experiences.

Med Care. 2019-10

[7]
Is research on patient portals attuned to health equity? A scoping review.

J Am Med Inform Assoc. 2019-8-1

[8]
Design and Development of a Person-Centered Patient Portal Using Participatory Stakeholder Co-Design.

J Med Internet Res. 2019-2-11

[9]
Adoption Strategies for Electronic Patient Portals: Employing Advanced Data Mining and Analytics.

Stud Health Technol Inform. 2019

[10]
A Review of Web Portal Use by Oncology Patients.

J Cancer Treatment Diagn. 2018

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